Catching up, April and May

Apologies for not updating. Life has been extremely busy. We must catch up on what has happened in April and May. Let me rewind a bit. I forgot to mention that during the week of Aidyn’s surgery recovery, we requested he get an ultrasound to rule out problems in his brain. The doctors felt he probably didn’t have any major brain injury issues, but still ordered the ultrasound. The results were good, no apparent damage such as bleeding or lack of oxygen. Around the 27th of April, Aidyn had an echocardiogram done to see if there was a possibility Aidyn had a clot from his heart that could have contributed to possible circulation issues of the small intestine. It could help in determining why Aidyn got NEC. Well, a small clot was found in his superior vena cava. But, since his blood flow was very good around his heart, the doctor’s ruled out a problem there. The neonatal doctor’s suggested treating the clot with medication, but the cardiologist said that since the clot was small, there was no need to treat it. Another echocardiogram was done about four days later, but it had grown a little. This time Aidyn was given Lovenox, a blood thinner. We were told he would be on it at least three to four weeks. Aidyn also received an ultrasound of his abdomen to be sure there were no other clotted areas. There wasn’t. So, the NEC has no known trigger.


On May 1st, we met with the transplant doctor and the coordinator of University Medical Center from Tucson. It was discussed that Aidyn would have to be 20 – 22 pounds and stable before he could have the intestine and liver transplant. He would probably be 1 to 1 ½ years old when he was given the transplant. It seemed so long. The transplant coordinator had bad news. Our insurance doesn’t cover small bowel transplant. We were shocked. They said they could appeal the insurance company, but would have to wait until Aidyn was closer to getting the transplant. That put a damper on the weekend. There had to be another way, I thought. I remembered the morning of the consult, talking with a kind lady while we waited for our transplant consults. She mentioned that a woman at UCLA was allowed to use an alternative lipid for use with the TPN, but it came from Europe somewhere. During the weekend I began to search for an alternative to the TPN. I found Omegaven.